Surviving Silent Reflux
I’ve been dreading and procrastinating writing this post but the further away I get from it, the less I seem to remember so I’m posting it now so that I can more accurately share what was going on and how we got through it.
Infant reflux is a condition that causes the contents of the stomach to move backwards along the digestive tract and into the esophagus. It is usually due to the immaturity of the gastrointestinal system and can cause a burning sensation in the chest and throat, neck and back arching, general discomfort and fussiness. The main difference between reflux and silent reflux is that with reflux the baby will typically spit up and with silent reflux the acid will move upwards and then make it’s way back down into the digestive tract causing a burning sensation during and after feedings for up to 90 minutes after. Many infants with reflux will have an improvement in their symptoms around three or six months but for a smaller percentage it can take closer to a year. In this post I will share our emotional experience with silent reflux and the details of how it progressed for us personally as well as some tips that helped us along the way. I’m also linking to an infographic on reflux with research that I completed for my masters program, a chart on how to differentiate between GER (gastroesophageal reflux) vs. GERD (gastroesophageal reflux disease). , and a video of Parker experiencing Sandifer Syndrome.
It’s painful for me to go back to this place. Sometimes I don’t even want to look at my pictures and videos from the first few months because it takes me right back to that time where Parker was so extremely uncomfortable and I was so confused, scared and anxious. When I was pregnant no one really warned me about reflux. People mentioned that you might have a colic or fussy baby and you just won’t know what kind of baby you’ll have until they’re here but reflux wasn’t something anyone I knew experienced or talked about. Parker’s entry into the world was long and intense. You can read about my 24 hours of labor and birth story here. I immediately sensed that she was uncomfortable. I didn’t know why or how and assumed that it was maybe from the stressful birth which of course made me feel guilt. I also wasn’t entirely sure if this was just how babies were after birth or not but my mama instinct told me something wasn’t right. Now that I can identify reflux symptoms, I can see her having it even in the first videos that we took at the hospital. We didn’t plan on sending her to the nursery but were so scared with the way she was making gagging sounds and choking faces on our first night that we ended up letting the nurses take her for a little.
After coming home the discomfort continued and got worse. I still didn’t know it was reflux. I thought she was traumatized from the birth and maybe “colic”, an unexplained term for a fussy baby. On top of my postpartum hormones completely crashing, I was left feeling so confused as to why my baby, that I could not be more excited to have, was so unhappy and uncomfortable. I wanted so badly to feel that immediate connection with her that I pictured but we only had quick little moments of it in between the reflux episodes, which was constant. We thought it was gas and started to bicycle her legs but not much was helping. I noticed she was more comfortable and calm with Bryan than me. I realized that I was her source of food and also her source of discomfort. Two weeks after she was born was Bryan’s first day back to work and my first day completely alone. I was dreading it and so anxious all weekend. She cried from 9A - 9P that day. It was our worst day yet. I cried for a good chunk of it too. People told me that some days will be harder than others so I still wasn’t sure if this was just one of those “harder” days, but deep down I just knew something wasn’t right. Bryan’s second day back I told myself that I needed to be stronger for her and calm because she could sense my stress. I made it through the first morning hours until 12 which felt like a lifetime and then just completely broke down after 3 straight hours of her crying, screaming, and arching her back in discomfort. After that, I brought her to the doctor who diagnosed her with silent reflux. She didn’t spit up much so I never would have assumed it was reflux but “silent” reflux is when the acid comes up into the esophagus but then goes back down without spit up.
For the next month we tried everything. I wanted so badly to keep her off medication at such a young age. I exhausted all of my alternative options (baby chiropractic, Nat Phos which is a homeopathic medicine, and a one month trial of an elimination diet for me cutting out caffeine, dairy, soy, gluten and egg). Do you know what it’s like to have to cut caffeine when you’re up all night nursing and all day with a screaming baby? Absolutely horrible, but I was willing to try anything to help her feel better. I also was eating nearly nothing on the elimination diet and spending my days bouncing her in my arms back and forth around the house literally all day to distract her from the pain and because she hated being on her back or if I stopped moving. I was completely sleep deprived, nutrient deficient, an emotional wreck but was just so focused on getting her better.
1 pediatrician, 2 pediatric gastroenterologists and 3 lactation consultants later, we finally decided that we needed to put her on medicine. I had my hesitations, and a few months after putting her on Zantac they recalled it which made me feel even worse, but I had to just keep reminding myself that we needed to get her out of pain and this seemed to be our only option. The medicine made a huge difference. We were so relieved to see our happy, comfortable baby that we knew she was. Feedings started to be more than just a few seconds. She was eating without throwing her neck back and arching in pain after a few minutes, she was sleeping better without waking up grunting, groaning and tossing her head back and forth from being on her back. The issue with Zantac is that it’s very weight sensitive. Now that she was actually eating she was also growing which was great but she was outgrowing her dosage as well. Every time she did, her symptoms immediately started back up and lasted a good week or so while her body adjusted to the increased dosage. We played this game for months. I was so happy to see even a little success with her that it felt like everything was better but I realized after that even when things seemed SO good, she still was so far from being a generally comfortable baby. Eating for 3 minutes instead of 30 seconds was great, but she still constantly wanted her neck in a tilted back position to alleviate the burning sensation and also still had Sandifers Syndrome, which is quick, spastic movements caused from the muscles contracting. The medicine made a HUGE difference, but we still had to take it day by day.
This was when Parker was 7 months having Sandifer Syndrome (abnormal spasmodic neck arching, tilting, twitching) while sleeping. She was most comfortable sleeping in our arms so that we could comfort her and keep her asleep while it happened. This would also happen more drastically during and after feedings.
When it was at it’s worst, it was a vicious cycle of feeding, her pulling off screaming, me trying to calm her down for however long it took for the discomfort to go away (sometimes 60-90 minutes after a feeding) and by the time I finally did it was time for the next feeding. Sometimes I would go in a dark room during the day with the sound machine on just to try to get her relaxed enough to eat. I would call Bryan crying and begging him to come home from work early. I even packed up all of our stuff to go stay with my parents for a week but then didn’t end up going. When Zantac was recalled we tried to stop her on meds but the reflux started right back up. We also tried to wean her off of them a few times but same thing, it creeped right back in. We ended up switching her to Pepcid (Famotidine) but luckily didn’t have to stay on it for too long. Sleep training was never an option for us. I tried some gentle training here and there when things seemed to be going well but even if she knew how to put herself to sleep, she was often too uncomfortable to stay asleep for long periods of time and as soon as she outgrew a dosage, any progress we made went down the drain. The doctors seemed to think that formula would not make a difference so I never tried it.
Things started to take a turn around 6 months when she started sitting and eating solids. It was still there but her symptoms seemed less extreme. At around 8 months when she started crawling, we felt like we had survived this. I think this is when she officially outgrew the severity of it. The doctors told us all along that she had a severe case and that it was likely just going to take time for her digestive system to mature and outgrow it. She was a different baby when things got better. We took her off her meds at 9 months, what a relief. After that and once we knew she was comfortable we were able to sleep train her too (will do another post on that). It felt like after 8 really long months, things were finally falling into place. She was happy, sleeping, eating…such simple things that you don’t realize how hard you might have to work for and how appreciative you will be when they’re going well. Now at 11 months we can still hear her having some reflux on and off but it doesn’t seem to be bothering her. I’ve had to start supplementing with some formula when my supply is too low and that was when it started back up again but it’s nothing compared to what it used to be.
I did a group project on reflux for school and am sharing an infographic I made below that provides some more research and information and can help you differentiate between GER and GERD. Parker had silent GERD. It was one of, if not the hardest, things I’ve gone through. Feeding after feeding, day after day, month after month, of feeling incapable of my one job: to nourish and comfort my baby. I know that I was doing everything I possibly could to help her but the feelings of failure and of being out of control were still there. Don’t get me wrong, there were definitely still good times during this time period and now that we’re through it I don’t think about it often, but I am just so thankful that she’s better. We have a wonderful breastfeeding relationship now. We have hard days but even the hardest are nothing compared to those times. I’m sharing this post to create awareness of what silent reflux is like. I want other new mamas to know about it and be able to recognize the signs if they have a baby that everyone is telling them is probably “just colic” and to know that you are not alone especially with the emotional toll that it takes on you. Some random things that helped us were:
keeping her upright as much as possible (even if that meant sleeping sitting up sometimes in the night so that she could be upright on us). we elevated her bassinet and crib but that wasn’t enough
the Fischer Price swing helped keep her more in an upright position during the day
keeping her in a carrier - I used the Solly wrap as a newborn and then switched to the Boppy carrier
skin to skin
bouncing, shhhh-ing, rocking…these were all distractions from what she felt
she napped much better in the carseat or stroller because of the upright position
she always seemed to be better when we were with other people. Again, something that was emotionally hard because people always said “she seems fine!” but I think it was a distraction for her and also gave me some sanity to be able to pass her off for a few minutes and catch my breath
I had a wonderful lactation consultant in the hospital at Monmouth Medical, Robin, who hosted a weekly breastfeeding group. She was there for me through text, call, or in person whenever I needed. She understood what I was going through and I don’t know what I would have done without her guidance through this.
My advice - try all of the recommended things: removing dairy and other allergens from your diet (this is a very common cause), shorter feedings, baby chiropractic, keeping baby upright after feedings, probiotics…it’s worth a try and these do help in a lot of cases. If nothing is working as in our case, then just take it day by day. Even if you do not typically lean on conventional medicine, maybe consider it. Remind yourself that you’re doing everything you can to help your baby. Have support…husband/partner, friends, family, neighbors. Some days I felt like I couldn’t be around other people because it was just too overwhelming on a really bad day but a lot of the time it helped me feel better. If you are going through this I’m here for you, send me an email any time <3 You will get through this mama!
